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Title: how long are your episodes Post by macklessdaddy on Nov 14th, 2005, 7:17pm HI everybody im new to the forum so hopefully im posting in the right section ,my ch usually last about 7 to 10 days usually once a year but this time is after a 3 year hiatus,so how long does your episodes last,also i cant work when i have ch ,how do you guys work with such pain |
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Title: Re: how long are your episodes Post by Jonny on Nov 14th, 2005, 7:31pm Mine lasted 30 straight years until last year....the fuckers just went away...Go figure. |
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Title: Re: how long are your episodes Post by E-Double on Nov 14th, 2005, 7:34pm The first decade consisted of 2 brief cycles lasting approximately 1 month. This past cycle is 20 months and going strong. |
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Title: Re: how long are your episodes Post by macklessdaddy on Nov 14th, 2005, 7:37pm now correct me if im wrong but when you say 30 years do you mean everyday you have these damn things ,holy spit I better stop complaining then |
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Title: Re: how long are your episodes Post by E-Double on Nov 14th, 2005, 7:42pm on 11/14/05 at 19:37:46, macklessdaddy wrote:
That's pretty much what he meant brother. One attack is too much!! I'm in a 20 month cycle yet I have gone 3 days (dare I say) without a full blown cluster. Shhhhhhh don't tell ;) It's the first time in a LONG while since I've gon CH free. We shall see. Don't worry about "complaining" We all have to deal with this CHit and some have short cycles while others are chronic and each "suffers" and lives in their own way. We are here to learn from, support, and teach eachother. Period! Welcome to the show! E edited so that the department of education does not revoke my certification [smiley=laugh.gif] |
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Title: Re: how long are your episodes Post by Jonny on Nov 14th, 2005, 7:43pm on 11/14/05 at 19:37:46, macklessdaddy wrote:
No, sometimes I would be pain free for 3/4 days....I even went 7 days pain free once. Having chronic CH has an advantage.....you never fear that the pain is coming......cause its always there ;;D Pain is pain, Bro.....you feel it just like everyone else and you have a right to complain....thats why we are here!! |
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Title: Re: how long are your episodes Post by E-Double on Nov 14th, 2005, 7:45pm on 11/14/05 at 19:43:02, Jonny wrote:
That's my favorite part ;;D |
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Title: Re: how long are your episodes Post by pattik on Nov 14th, 2005, 7:47pm For the first twenty or so years that I had them, an episode would show up once a year for 4-5 weeks, in the spring or fall. For the last six years, there has been more time between--more like 18 to 24 months. |
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Title: Re: how long are your episodes Post by Jonny on Nov 14th, 2005, 7:52pm on 11/14/05 at 19:47:34, pattik wrote:
Hey EX2, shes one that fears the arrival.....LOL ;;D |
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Title: Re: how long are your episodes Post by pattik on Nov 14th, 2005, 8:05pm on 11/14/05 at 19:52:49, Jonny wrote:
youbetcha! ;;D |
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Title: Re: how long are your episodes Post by vig on Nov 14th, 2005, 8:10pm it progressed from 2 episodes a year, about a month long eaCH... to 4 episodes a year, about 2 months long eaCH... |
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Title: Re: how long are your episodes Post by Jonny on Nov 14th, 2005, 8:11pm on 11/14/05 at 20:05:28, pattik wrote:
I now join those ranks, babe....after so much time PF I am in fear like you read about that this shit will return like a frieght train. Its not a good feeling....one that I never had before :o |
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Title: Re: how long are your episodes Post by macklessdaddy on Nov 14th, 2005, 8:23pm wow this is some deep CHit , i pray for you all but i got a question WHY US DAMNIT, WHAT DID I DO TO DESERVE THIS |
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Title: Re: how long are your episodes Post by Jonny on Nov 14th, 2005, 8:27pm on 11/14/05 at 20:23:31, macklessdaddy wrote:
I stopped asking that a long time ago.......Learn how to manage your pain the best you can and get on with your life, thats all you can do and this is the best place to do it!! |
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Title: Re: how long are your episodes Post by Redd715 on Nov 14th, 2005, 8:29pm Jonny, You know...there is also the possibility you may enter the ranks of Charlie.... I'll tip the glass with you in Milwaukee Bro..(but no beer for this gal...) |
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Title: Re: how long are your episodes Post by Kris_in_SJ on Nov 14th, 2005, 8:31pm I keep asking myself the same question! As for me, CHA's for about 11 years now - started late in life at the age of around 40. So far one episode every 3-4 years lasting about 12 weeks each time My last episode was much more tolerable and shorter in terms of intensity and duration thanks to high-dose Verapamil and a Prednisone Taper. Sure took a long time to wean off the Verap, though. My sincere hope is that my episodes stay as far apart as they are. I can't even think about one a year, let alone the chronic thing. Kris |
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Title: Re: how long are your episodes Post by youngmichael on Nov 14th, 2005, 9:00pm My clusters last from 1 to 4 months, and for the last 4 years or so they have all started in October. My episodes last from 15 minutes to 3 hours. I have 1-3 a day. How do I deal with the pain at work? I have been really lucky not to have more than a k6 at work this year. For the bad ones I take a long washroom break and sit in the stall until it becomes less severe. |
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Title: Re: how long are your episodes Post by E-Double on Nov 14th, 2005, 9:02pm on 11/14/05 at 20:23:31, macklessdaddy wrote:
You are obviously one of the righteous folks that satan is trying to overtake or........ You have forgotten to wear your tinfoil hat like most of us have learned. Seriously though, you were probably a real CHitty kid.... J/k We're born with them dude. It's just a matter of time until they surface. Be well and stop questioning it! E on 11/14/05 at 19:52:49, Jonny wrote:
Sounds like a teaser to a thriller. Fear the arrival!!!!!!!! :o |
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Title: Re: how long are your episodes Post by kimmiedawn81 on Nov 14th, 2005, 9:14pm Mine are normally 6 weeks, but so far this year they've lasted about 10 or so. They seem to be getting better (knock on wood), just shadowing a bit here and there. So, maybe they're over.....don't tell anyone! |
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Title: Re: how long are your episodes Post by BlueMeanie on Nov 14th, 2005, 10:48pm Shortest was 8 weeks. Longest was 18 weeks. Once or twice a year. 2-4 times a day. Lucky for me I'm in my longest remission ever in 29 years. Almost 2 years if it last a little longer. :o |
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Title: Re: how long are your episodes Post by MJ on Nov 14th, 2005, 11:05pm I too have had CH for 30 years only episodic. Cycles last 4 months to 3 years. Unlike jonny though I got lots of breaks between cycles My cycles seem to come whenever but had a nice 1.5 year break, just started a new cycle a few weeks ago It s at the start of acycle that its hardest to work. but you settle in after a bit and just learn that you gotta get up and go as soon as the pain subsides or your gonna be miserable. (convincing myself here) Theres allways pain free moments for most to make the most of dont waste them. However now and then you have to blow off part of a day like today. |
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Title: Re: how long are your episodes Post by pattik on Nov 14th, 2005, 11:10pm on 11/14/05 at 20:11:40, Jonny wrote:
No, it's not a good feeling. But now I just keep myself armed and |
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Title: Re: how long are your episodes Post by Mr. Happy on Nov 14th, 2005, 11:12pm Episodic, every 3 years like clockwork for 60 days, except for last yer, and maybe this year. Next year too. I suck at this for a Beta Tester. on 11/14/05 at 20:23:31, macklessdaddy wrote:
How the hell should we know? You _obviously_ sinned grievously in this, or a past life. That's the only explanation I can think of. Lick Spittle from the Boot of God, read everything you can, pay attention to the few nuggets of wisdom randomly interspersed, and you might come out ahead of the game. Cure or curse. The letter "s" makes the difference. You figure that one out. Too deep for me. RJ |
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Title: Re: how long are your episodes Post by marlinsfan on Nov 15th, 2005, 1:38pm I cycle usually once per year, for 6-8 weeks. The last cycle lasted 12 weeks, and came after 3 years PF time. No idea when the next one will come, nor how long it will last. All I know is that it WILL come, so I make the best of life while I'm PF. |
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Title: Re: how long are your episodes Post by Sandy_C on Nov 15th, 2005, 3:40pm I'm episodic, cycles lasting anywhere from 9 weeks to 16 weeks, but happening every 1-1/2 to 2 years, so I do enjoy quite a bit of pain free time. And, you didn't do anything to deserve it. You were born with a broken hypothalmus, just like the rest of us. As far as being able to work while in cycle, I've never missed one day of work - maybe have had to take a few "breaks" during the day lasting from 15 to 30 minutes, but have never, ever said I could not work. Unless you are in CONSTANT pain, 24/7, a cluster hit should not prevent you from going to work, unless it's a fear that you will get a hit while at work. I always carry my arms against this beast, and I keep some necessities in my workplace. The most important thing to keep your job is to tell your employer what is going on with you, and that if you get hit, you will need a little time until the hit passes. If he doesn't really believe you, let him witness a full blown hit - it was embarrasing, but it worked for me. The hit doesn't last all day long, unless, as I said above, you are in pain 24/7. In that case, it probably is not CH. Just my [smiley=twocents.gif] Sandy |
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Title: Re: how long are your episodes Post by Shaz on Nov 22nd, 2005, 11:20am Cycles a bit similar to Sandy. Every two years and lasting for about 12 weeks. The work part is one of the reasons I wanted to try and find out more about what was going on. My GP has just always dosed me up with a very high dose of diazapam so this time I had to be signed off for three weeks. What a stupid waste of time.... Did nothing to abort the CH's just meant I lost a lot of money. Looking forward to my Neuro in Feb. Thanks you lot for putting me on the straight and narrow..... Shaz :-* |
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Title: Re: how long are your episodes Post by Beastfodder on Nov 22nd, 2005, 12:52pm I WAS every Autumn for the past 8 years, lasting 2-3 months with up to three two and half hour K8 headaches per day. Working was harsh - even self employed you got to get out there and earn a crust, but it was only the morning headaches that'd cause a little disruption - since other hits would be evening and night. Couple of weeks and you're a zombie, especially on crap like carbazemine, pizotifen. Got the habit of doing Christmas with the in-laws in Ireland after a cycle - sleep and really quite a lot of Guinness being a pretty good tonic. |
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Title: Re: how long are your episodes Post by kissmyglass on Nov 22nd, 2005, 6:03pm a loong cycle...around 5 years and counting... :( |
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Title: Re: how long are your episodes Post by yikes-another-one on Nov 23rd, 2005, 4:54pm Mine has changed to much to nail down. At first I was getting headaches On Saturday, Monday and Wed... for a Month. then I would get them like that every other month. then last year I had 4 - 8 headaches everyday. then in May it changed again...and now I am getting less headaches...but still every 3 or 4 days.... so No real definable pattern. but it is what it is....to quote a sage i met on here. Just keep hoping for more pain free days and enjoy the heck out of the time you do get. |
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Title: Re: how long are your episodes Post by BMoneeTheMoneeMan on Nov 24th, 2005, 3:07am My cycles have been about 2 to 3 months. I recently have been doing the clusterbuster treatment, and i basically stopped this most recent cycle right when it started. I still get hit every couple days or so, but its 1 time, and not very intense. Living in the fear of the beast hammering you at any time is a tough one. Just going for a month PF makes you forget how bad your head would have to hurt to make you drop to your knees. then, one day, expecially when you have made important plans WHAM!!........................ and you think to yourself, holy SHIT, these things HUUURRRRRTTTTTTT!!!!!! PF wishes BMonee |
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Title: Re: how long are your episodes Post by unsolved1 on Nov 24th, 2005, 10:02am This cycle has lasted just over 5 years and still going strong. :-/ UNsolved |
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Title: Re: how long are your episodes Post by jangus on Nov 24th, 2005, 2:51pm I've been at it for 26 years. The pattern has always been 12-18 months PF and then the cycle, which happens at any time of year for me, lasting between 6 and 10 weeks. Nightime hits are more my thing, although I've had my share of daytime hits as well. I've always been told by docs, "...this will get easier as you age..." Well, I'm 49 and I'm still waiting to age... I guess. Although, my last cycle (currently in a cycle right now) was in August - September of 1992, when I was referred to a Licensed Practical Nurse who was also a "Quantum Energetics" practicioner. I had two treatments by her and she ceased that cycle for 3 years and one month! First time I had ever had that long of a break. Of couse I was telling everyone how sold I was on this amazing therapy that works for many conditions... Quantum Energetics! Blah blah blah... well I got hit again on November 6 of this year. I've had two sessions with her since (having another one on Monday) and I must say, things have gotten milder. Although I must say, due to finding this site, I'm doing a lot of other recommendations including, O2 at onset; Melatonin at bedtime; Kudzu root - 2 capusles, twice a day; had an Accupuncture treatment along with Shiatsu massage and three different types of Chinese herbs - - one for my swollen liver, one for my disfunctional aorta, and one for digestion. It's all about "waking up to take care of yourself" is my little theory. I totally change my lifestyle upon entering a cycle. Stop drinking alcohol; stop smoking pot and cigarettes; start eating three healthy meals a day; stay away from ultra rich stuff like nuts, chocolate, night-shade veggies (tomatoes, peppers) cheese (dairy in general) shell fish and sugar. Drink a hot cup of coffee at the onset after you've sucked O2 for about 20 minutes! That seems to be the best medication for me. All that other crap just makes the pharmceutical industry bigger and sets you up for additional problems on into the future. Here's wishing you all well and a very Happy Thanksgiving! Peace. |
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Title: Re: how long are your episodes Post by cazman on Nov 25th, 2005, 1:32pm well it was two times a year 4 too 6 weeks per cycle this year the rules changed alot my first cycle this year started sometime in june and and went twice as long and twice as brutal , then i started the mg treatment which took some time to get the right dose for best results well its now november and i still get what ive been told is called snaps they equal about a 3-4 in pain and last no more than 20 min and i only get them two or three times a month at night almost always at 1-2am. i take mg once a month in a very small dosage to maintain the peace in the head. jonny congrats on the good news that they just went away i truley hope it stays that way for you bro. |
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